Still waiting for an answer

Ian,

We are waiting on an answer from our Neurologists.

We will get back to you in due course.

Hi Ian

This seems like a perfectly reasonable question to me. I appreciate it might take some time to finalise an answer as the board of trustees might have to seek advice from Prof who could be extremely busy. However, I'm surprised nobody has come back to you with an interim response advising you of what actions they propose taking to address your question.

Perhaps you should be asking whether it is OUCH policy to ignore questions from members and bury their heads in the sand? Of course, it could also be that the trustees don't look at this forum, preferring Facebook??

Brace yourself, this thread may get locked down now!

Keep smiling!

Mr Git *smile*

Ah Scott, looks like our messages crossed over.

You must have sensed me logging in!!

Look forward to reading the response.

Thanks

Sean

Hi Scott

Why do you need a neurologist to answer a question on OUCH policy? Surely its written down somewhere for you to be able to quote?

Sean I know :)

Ian

(zanycheff)

Has anyone seen the ship's Captain, we appear to be adrift?? *scratch_one-s_head*

Recent discussions brought about by concerned members have been discussed at length by the board and the scientific elements referred out to our friendly neurologists.

One of our trustees was challenged from a 3rd party via private messenger regarding someone else's treatment. The person who was prescribed Frovatriptan and Sumatriptan as a (semi) preventative night treatment and single 24 hour abortive treatment  had those items prescribed by a headache specialist neurologist and the person is supported by a specialist headache nurse, both of whom are very well known to OUCH(UK). While we all acknowledge that there are contraindications between triptans we also acknowledge that Frovatriptan isn't a listed or approved treatment option for CH but remains a go to tool in the arsenal of many sufferers. Indeed many treatments available to sufferers aren't designed or intended for use with CH, but are used regularly under the direct guidance of specialist medical professionals and their medical staff who have met and assessed the sufferer and taken their circumstances into account. It is for individual physicians, viewing individual patients, to come to a view and decision about how to manage a particular patient. 

During this episode, trustees have come in for criticism on whether or not they should interfere with the specialist advice of a neurologist or other health professional. The trustees, volunteers and other officers, offer best quality and consistent advice to sufferers and supporters but are obviously not in possession of all the information a physician has. Such advice always carries a caveat that clarification must be sought with their specialist. OUCH(UK) are not medical professionals, we have long had disclosures about that and in times gone by, forum posts were often signed off as such. Any queries about medication or discussions with trustees and officers about changes or concerns in medication should always be discussed with a medical professional.

We would ask you to please remember that trustees have all the distractions and strains of life as well as the responsibilities and workload associated with the charity - not forgetting that they too are coping with this condition and for some trustees, various headache disorders and other conditions.

Thank you.

OUCH(UK) Board of Trustees 

Thank you Dorothy and the other trustees 

all i actually wanted was how we deal with how we deal with concerns not the individual treatment involved :)

and I hardly challenged just informed of my concerns 

thanks again 

Ian

Interesting discussions. Not sure that I agree with OUCH locking down a reasonable thread nor that this topic needed comment by the trustees. Surely, it must be OUCH policy to always refer patients back to their Neurologist? I cannot see what the issue here is. Zanycheff appears to have reasonably highlighted that meds may be contra indicated and suggested the person checks back with their Neurologist for clarification - excellent advice. Why did OUCH take issue? I have done similar on Clusterbusters.

Lisa,

OUCH(UK) did not 'take issue' we referred part of our discussion out to our friendly Neurologists for verification. We always challenge ourselves as a board to review our position when a member asks such a valid question, as noted, these answers took a few days to come back. 

This was done to ensure that established conventions were indeed the correct position for the charity.

Scott,

To clarify - it's in keeping with OUCH "established conventions" to highlight to fellow sufferers any unusual/contra indicated med regimes and suggest fellow sufferers check back with their Neuro?

Lisa, 

I will refer you to Dorothy's post on the subject. 

Scott

Not helpful. Naturally I already read Dorothy's post. I must be being thick, but am totally confused and bewildered by what the OUCH suggested position on this is? Are you saying we as fellow sufferers should highlight concerns to our peers about medical regimes they are on that don't accord with our knowledge? Or are you (OUCH) advocating that we should ignore comments by fellow sufferers, on the basis that they are unique and have been reviewed medically and therefore must be on the correct med regime cos a Neuro has advised them so? Not tryng to be awkward - just want guidance on the most sensible approach in future.

Lisa, 

sorry that you find the trustees post unhelpful.

I was refering to your post - redirecting me to Dorothy's as being unhelpful not Dorothy's post. Can you just answer my reasonable enquiry in simple words. Do OUCH recommend we do the former or later in my last post?

Lisa we are not medically trained so we are not in any position to disagree with a specialist's treatment of his patient. We have always referred members back to their medical professional to discuss any concerns. Of course we can all discuss what is on the leaflet info and be aware of contraindications but as has already been said, the neuro assesses his own patient, has their medical history and plans treatment accordingly. If the patient has concerns they must discuss them with their neuro. It is then up to the patient to accept the treatment or not. When I was working for a GP there were times when contraindications were flagged up on treatments following specialist consultations but in certain instances it was deemed acceptable by the consultant for that particular patient and duly monitored.

Dorothy

Sorry Lisa,

My referring you to Dots post was deliberate, as the statement in the post is the position of board of the trustees and the charity.

Thanks. I will carry on as I've done in the past and Zanychef appears to do also - ie highlight contra-indicated med regimes and suggest they go back & check with their Neuro - just in case their Neuro is just a Neuro and not a CH specialist